Caring for a child with autism can push you to your limits, but it is okay for you to schedule a time-out…
Caring for a child who has autism is the ultimate labor of love. Your child always needs you and you need to be there for your child. Yet despite your best intentions, there are recurring moments in every parent or guardian’s life when this effort becomes too overwhelming. The non-stop care, support and guidance can chip away at even the most strong-willed parents.
Parents need the same kind of support they give their children, which is why respite care is so essential. “Even the strongest and most loving parent needs an occasional break from the routine,” says Robin Zaborek, Programs Director at the Autism Society of Colorado and head of its successful respite care program, the Give Me a Break! Respite Care Program. “Respite should not be considered a luxury, but a necessary part of your child’s long-term care.”
Parents of children with autism understand they endure constant stress, fatigue, and pressure, but they may not realize its severity or potential long-term effects. In fact, a 2007 study from the University of Wisconsin-Madison found that mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers. In a companion study, researchers found that mothers of those with autism reported spending at least two more hours each day caregiving than mothers of children without disabilities. On average, these moms were also twice as likely to fight fatigue and three times as likely to have experienced a stressful event.
While it’s clear that parents and guardians need a timely break, your child also can benefit from respite care. Many children with autism grow up knowing only their direct family, but it’s good to help them establish relationships with other caregivers. This kind of interaction can help your child become a little more independent and a little less dependent on you. A reprieve from parents even might encourage children battling power struggle issues—for example, toileting—to be more successful. “Enter someone new and your child may be more receptive,” says Zaborek, who has a teenage daughter with co-occurring autism and Down Syndrome and an adult son with Down Syndrome.
Trusting in Respite Care
There are different levels of respite care and all kinds of available programs. Some offer a specified set time—a few hours at a time with a limit per month or year—while others provide strictly in-house or off-site services. Some have weekend and even more extended options.
No matter what type of service you choose, it is critical for parents to be comfortable with the caregiver and arrangement. “Parents are often nervous about letting others provide care because of their child’s particular behavioral challenges, even if they know they need to,” says Zaborek. “So they should be prepared to ask a lot of questions to eliminate any hesitations or fears they might have.” These questions might address the caregiver’s specific health care credentials such as CPR certification, specialized training in autism, how long the caregiver has worked with autistic children, and why they chose this field. (Keep in mind that many respite care workers are volunteers.) For out-of-home care, does anyone monitor the facility for safety and health measures? Will you need to carry additional insurance to cover the provider while he or she is in your home?
It is also acceptable to ask for references and a background check. Also, insist on a contract that provides specific details of services so there will be no surprises.
For the initial respite visit, parents may choose not to leave the house, but rather give the caregiver and child time alone in another part of the home. “This helps establish trust and comfort for parents who are particularly sensitive to leaving their child alone,” says Zaborek. “They can do laundry, work in the garden, or just read in their bedroom without being completely away, but don’t expect a connection off the bat. Sometimes it takes several visits to create that bond.”
The Secret of Your Success
Parents also need to help caregivers do their jobs better. One effective tool the Autism Society of Colorado suggests for parents is to create a personalized respite care notebook which outlines all need-to-know information. This can include emergency contact numbers, types of medication and proper dosage, how to communicate when the child is not responsive (either verbally or non-verbally), a breakdown of the normal daily routine, and back-up strategies for specific outbursts or resistance (if this doesn’t work, do this; if that doesn’t work, try this). “The goal is not to paint a dire picture, but to prepare the caregiver for any viable obstacle and ensure a successful respite visit,” says Zaborek.
Providers also should be aware of individual sensory issues your child may find disturbing or might trigger episodes, such as high television volumes or noises from a vacuum cleaner or blender. To help strengthen the caregiver-child bond, parents should share some of their child’s special interests or hobbies. For instance, if your son is into dinosaurs, suggest the caregiver bring dinosaur books or toys to increase interest and interaction.
Your child needs proper preparation for visits too. The best method is constant communication and reinforcement. For example, place a picture of the caregiver in full view and make regular references that Ms. Katie is coming to see him or her, and she will make dinner tonight, and read the bedtime book. Or you can create a picture schedule that shows all the events of the visit: the caregiver arriving, the two of them eating together, watching TV, and preparing for bedtime.
What should parents do during their precious time off? Whatever you need to do to simply re-group. Some families only want to go for a long walk, or read a book, or just go to the grocery store. “Getting an opportunity to do even banal things can be so life-saving,” says Zaborek. “I have known some couples who have not been out together in six years.”
Do not shy away from more dynamic outings like dinner and a movie, strengthening family cohesion with your other children, or re-establishing relationships with friends and couples. Zaborek once used her respite care time to throw her husband a 50th birthday party. “It meant the world to me to be able to carry out something special that wasn’t focused on my child’s autism. I didn’t have to worry about my children and I could fully relax and enjoy myself,” she says. “I wanted to make him feel special and it made me so happy to give him and our guests my undivided attention.”
Parents of children with autism often cite available respite care as their No. 1 unmet critical need. However, one of the biggest roadblocks is proper funding. There is no direct federal support available and private health insurance does not cover this type of care. Still, most states have respite care programs specifically for families affected by autism. They often are funded through foundation grants and private donations. Costs are often on an hourly basis, but some services may offer a sliding scale based on family income.
Also, many states offer some respite assistance through Medicaid Waivers. Each state’s eligibility criteria and funding for waivers is different so you should check with your state’s Medicaid office. (If you live in Iowa, Colorado, Nevada, or Washington, and you qualify for Medicaid under income guidelines and other home and community-based services needs-based criteria, respite may be covered under that state’s Medicaid without the need for a waiver.)
Respite Care Has Helped the Whole Family
- By Alli Edwards
“It took me years of unbroken coping, with no relatives close by to offer help, before I realized the importance of respite care for me, my son, my family, and our future. Our son Jon, who’s 14, is severely autistic, unable to speak and still in diapers. Even so, I’ve made it my mission to gently peel away his layers of dependency on us, helping him to relax some of his more rigid behaviors and accept other people helping him develop skills he wouldn’t even attempt with us. Respite care has helped with this, although it hasn’t been easy.
The facility Jon goes to is a small, beautifully equipped respite care home that only takes in four kids at a time. Everyone, including Jon, is very happy with it. He hops about all excited when he is going for a break, and even helps to pack his bag. I think he sees it as his time away from us, with his friends, a group of youngsters with similar needs. They go out together supported by a wonderful team of trained professional carers, who bring new ideas and a fresh outlook to the table. And it has helped Jon in small but significant ways—for example, while he still needs one-on-one help to eat an entire meal, he now happily eats without me around. This had been a major obstacle in the past, as I was the only one who had ever fed him until the respite program was underway.
As for the rest of our family, we’ve learned how to spend time together again. We can relax, have fun, unwind, and even have stimulating debates without worrying about high-volume voices. Our eldest son, who’s 16, has been able to spend precious time with his mom and dad without our eyes being glued to his brother. Unusual home comforts when Jon is away include unlocking the interior doors and windows, having hot drinks on the table, and an escape from the relentless sound of full-volume children’s cartoons on the TV. Friends can come over and visit again without worrying about the unusual (to them!) behaviors they might see from our son.
It isn’t always hard to be with Jon—it’s just exhausting on a 24-7 basis. But we have moments of hysterical giggles at the cute things he does, and I miss him terribly when he’s away. That said, I know how much I need a break from him. It’s my time to relax and put up my feet.”